Thursday, January 1, 2015

Facing it Head on

A few months ago I took the girls to their open house at school. As we sat in Lily's class the room, everything started spinning. This had been a side effect of chemo- if I overdid it, sometimes I'd get dizzy.  But this was different. As we walked out the door I felt like I was falling over.  I grabbed onto Lily and she steered me to the car. I sat there getting my bearings and finally called my neighbor to come pick us up.

Last month I woke up and felt a similar dizziness. I threw in a load of laundry and within an hour the room was spinning. I laid on the couch- if I held really really still it was almost bearable but the nausea grew. Shortly I was vomiting. It became an ER trip and I felt too horrible to even panic when they refused to give me an MRI and did a CT instead. The CT didn't show a problem- so I was given fluids, dramamine and sent on my way. It took a week before I felt like the dizziness wasn't going to pop up. My mom suffers from vertigo, so I really just chalked it up to another win in the genetic lottery for Jen.

At my next chemo, we talked with my onc who said a brain MRI was probably a good idea. Then I ended up with the flu. Fever, chills, sniffles, overall misery. By the time I felt better it was time for chemo again.  I figured I was in trouble for not getting an MRI when the nurse took it upon herself to schedule it for me. The appt was 2 days later,  Christmas Eve.

Perhaps forces aligned to allow us a peaceful, happy Christmas. Phil and I are horrible with surprises and secrets. Both of us have been really feeling the weight of permanent chemo and it had been a rough couple of months, so we decided to plan a family trip and surprise the kids with it at Christmas.  Since I don't fly well- it had to be close and the closest stop is California. So California it was. I bought each kid a cold weather outfit and printed out a card that let them know we were going to Disneyland and to play in snow- I wrapped them up in boxes and put them under the tree. The excitement when they opened the presents was totally worth it.  But the next week was going to be one of the toughest.

On Friday I got a call from a radiation oncologist. Unfortunately I have 2 tumors on my cerebellum, the part of the brain that controls balance. So we now know the cause of the vertigo. My cancer is misbehaving.  We can't know for sure if it is breast cancer metastases unless we do surgery and that could have some pretty big repercussions- but the docs feel pretty sure it is breast cancer.  This week we met with different radiation oncologists, got to see the pictures. Never a good feeling to see a grape size spot in your nugget.  Neurosurgery was consulted and pretty much decided that surgery is too risky.  The recommendation is gamma knife radiation.  We got to see parts of Tripler we'd rather have not visited. We also got to see the Cancer Center of Hawaii- since they have the fancy gamma knife machine. I really like the rad onc we saw there, she even cited an article about gamma knife results in patients with LFS. As much as I dislike the idea of radiation and worry whether or not it will work in my already mutant cells- it seems to be the best option at the moment.  But no plan is set yet. Friends called in favors for me for second and third opinions. My brother in law graciously consulted his bosses at Mayo Clinic. I've read papers. I've lost sleep. Rehashed symptoms in my head- pun intended.

Today is the first day of a new year with a lot of new unknowns. I know this- I love my family and friends dearly.  We will need some support in the next few months, I just don't know what or how yet. We're not sure what's ahead but we will keep facing it one step at a time and living along the way. So today we leave to try and relax(ha!) and gear up for some pretty big hurdles. But I've heard some positive things from some respected docs and we will face it head on.


  1. We love you Jen and Phil and monkeys!

  2. We are here for you and love you...we can entertain kiddos anytime they want to come to the Beals resort#!

  3. My love, thoughts, and prayers are with you all.

  4. Jen, this is tough news. Sounds like there are great doctors and technology at the cancer center. Sending healing thoughts your way and hope the vertigo and nausea subsides. I also pray the procedure they do can remove the tumors. Wish I lived close by to help. Sending love and hugs your way.


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)